This is the tale of three women who never let anyone push them around. Yesterday Parveen, my aunt and myself went to Brigham and Women for my mother's Endoscopic Ultrasound, celiac axis block, and biopsy.
I went into the small prep area with mom because there wasn't enough room for all of us. The nurses hooked her up to an IV which was good because she had vomited the night before as well as in the morning.
In preparation for the EUS she was instructed not to eat after midnight and only a clear liquid breakfast at 7AM. She couldn't keep anything down, there was no food in her stomach.
As the nurses are going over the procedure they asked my mother "do you know why we're doing this? why you're here?"
My mother looks at me bemused...then asks "why am I here?"
In any event, the part where they got to the procedure I noticed that they didn't mention the biopsy. I asked about it and they said they weren't sure and to ask the doctor.
Half hour later the doctor, a Pakistani man, came to her bedside. He ran through the procedure, the risks, how the nerve block works, side effects, and some aftercare.
I probed him about the biopsy that the DFCI doctor told Parveen he wanted.
"I don't believe I am supposed to perform a biopsy today. Let us focus on just the nerve block."
"I wasn't a this appointment, let me call my cousin to make sure the doctor explicitly requested a biopsy"
Parveen confirmed that a biopsy was requested. I approached the doctor again.
"Well, if we have time, we shall do the biopsy".
Fine. Your clinic is running late because of a complex case in the morning. Fine. Not our problem. My instincts told me that this was not right.
A nurse approached me and said
"There's a 'family member' out there who's asking a lot of questions. I think you should talk to her."
That 'family member' was my cousin. So I told her what was going on and immediately paged the DFCI doctor. He called back and spoke to Parveen. He stayed on the line until the endoscopist doctor came out.
We did indeed cause a ruckus. The nurses were all confused.
"Doesn't the daughter need to be here?"
"No! I want to talk to the doctor. I have another doctor on the line he wanted to speak to the endoscopist."
Dr. A (DFCI) specifically said in his e-mail that a biopsy was to be done. The endoscopist, when confronted said "we were planning to do a biopsy all along."
When Parveen was able to speak to Dr. A in the waiting room she said
"He was NOT going to do a biopsy. Thank you for speaking to him."
In the end Pakistani doctor came out to tell us "She did remarkably well. It has not spread to the stomach or small bowel. There isn't blockage yet of the common bile duct which could make her nausea worsen. We were unable to do the biopsy because of the vasculature around the tumor. There would be a lot of bleeding if we punched through the vessels."
Other things were said that I don't remember now but at least we tried.
The poor man did not know who he was dealing with. Go ahead, steamroll over me, see what happens. Yeah I look young, and naive but I have support and I won't just take whatever a doctor says at face value.
When my persistence did not work I called in the backup. I am glad we didn't have to break out the "big guns" which is my aunt. She would've cursed him out in his own language no doubt.
We had the support of the patients in that tiny little waiting room. Our arrival time was 3:15 and we left the place a 7. A very kind nurse took my mother all the way to the car. She was so good to my mother in recovery, gently putting her hair behind her ear, calling her name to wake her up.
The doctors at my department were absolutely correct: there needs to be someone there at all times to be an advocate for the patient. I'm glad that even though I'm tiny, young, and look like I can be talked into whatever...I'm not. And I have support. :-)
Today, one day after the EUS and nerve block my mother isn't don't too too well. The pain isn't bothering her. She was able to eat some soup broth, some ice cream.
When I ask her what's wrong, she's unable to describe it.
I was glad to be home with her today. I would've been very worried had I gone to work.